Tuesday, January 22, 2013

MTX Anniversary

Today is our year anniversary of starting methotrexate.  Methotrexate is used to treat cancer, it's pretty scary stuff. 

I love that it made my baby stop hurting and allowed her to develop and grow into an active, bright, and beautiful little toddler but it still freaks me out.  And it's one of the least freaky drugs that is used to treat SoJIA.  I'm so thankful that it's working for us and we don't need to pull out the "big guns" quite yet, maybe we won't have to at all. 

I remember giving her the first shot and praying for a miracle, praying that this little tiny amount of amber colored liquid would give my baby some relief.  I knew that it could take up to 8 weeks to see improvement.  The morning after her 4th shot Mia woke up smiling, she allowed me to change her clothes and diaper without crying out in pain, she was using her hands to grasp toys and reach for things she wanted, she was like a whole new baby.  After that morning we haven't looked back, every week after that she felt better and better.  After a few months the fatigue that had plagued us even stopped, she no longer needed 3-4 hour naps on weekends and that extra nap at daycare.

I can't even explain the desperate place I was at when we started MTX, I would have tried anything to make her feel better.  At the time I don't think I even asked what the side effects or long term effects were, I just wanted her better.  At that point we had already tried so many different things, we were given drugs and then more drugs to counteract the side effects of the other drugs.

I feel like we're at a good place right now medication wise.  If she could just get rid of the darn heart med that's twice a day we would JUST be taking methotrexate once a week.  At certain points I felt like the medication schedule was taking over my life, I would have to set an alarm and wake Mia up twice a night for doses of fever reducers, anti inflammatories, or anti-nausea meds.

We take a trip to Madison on Friday, I'm going to address Mia's distended belly with her rheumy.  I thought it was a side effect of the steroids but now that we've been off of them for 2 months we're still not seeing much of a difference.  Hopefully if everything is good we won't see him again for 8 weeks!! 


Mama's little rockstar
 

 

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